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Why I'm Actually Grateful for My Lyme Disease

I vividly remember my first Lyme symptom. It was June 2013 and I was on vacation in Alabama visiting family. One morning, I woke up with an incredibly stiff neck, so stiff that I couldn't touch my chin down to my chest, and other cold-like symptoms, like fatigue and a headache. I dismissed it as a virus or something I had picked up on the airplane and waited it out. After 10 days or so, everything totally cleared up.

But over the next few months, odd symptoms would come and go. I would take my kids swimming and not be able to kick my legs underwater because my hip joints were in so much pain. Or I'd wake up in the middle of the night with severe foot pain. I didn't see a doctor because I didn't even know how to piece all my symptoms together. 

Then by early fall, cognitive symptoms started coming and going. Mentally, I felt like I had dementia. I would be in the middle of a sentence and start stuttering over my words. One of my most defining moments was after dropping my kids off at preschool one morning, just a mile from my house. I got out of my car and didn't know where I was or how to get home. Another time, I couldn't find my car in the parking lot. I asked my son, "Honey, do you see Mommy's car?" "It's right in front of you," he answered. But still, I dismissed it as brain fog.

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Photo: Susan Parnell

One evening I started typing all my symptoms into Google. Lyme disease kept popping up. I broke down in tears to my husband. How could this be? I had been healthy my whole life.

The symptom that finally got me to the doctor was severe heart palpitations that made me feel like I was having a heart attack. But a blood test at urgent care the next morning came back negative for Lyme disease. (Related: I Trusted My Gut Over My Doctor—and It Saved Me from Lyme Disease)

As I continued my own research online, poring over Lyme message boards, I learned how difficult it was to get diagnosed, mostly due to inadequate testing. I found what's called a Lyme literate doctor (LLMD)—a term that refers to any type of doctor who is knowledgeable about Lyme and understands how to diagnose and treat it effectively—who only charged $500 for an initial visit (not covered by insurance at all), whereas most doctors charge thousands. 

The LLMD confirmed that I had Lyme disease through a specialized blood test, as well as anaplasmosis, one of the many co-infections that ticks can pass along with Lyme. Unfortunately, after I underwent two months of treatment—taking antibiotics without any results—the LLMD told me "there is nothing more I can do for you." (Related: What's the Deal with Chronic Lyme Disease?

I was hopeless and scared. I had two young kids who needed their mom and a husband who was traveling the world for his job. But I kept digging into research and learning as much as I could. I learned that treatment for Lyme disease and even the proper jargon to describe the disease is highly controversial. Doctors are in disagreement about the nature of Lyme disease symptoms, making adequate treatment difficult to find for many patients. Those who don't have the means to afford or accessibility to an LLMD or Lyme educated doctor can really struggle to reclaim their health.

So I took matters into my own hands and became my own advocate, turning to nature when it seemed I had run out of conventional medical options. I discovered many holistic approaches to controlling the symptoms of Lyme disease, including herbal remedies. Over time, I gained enough knowledge about how herbs and teas helped my symptoms that I started creating my own tea blends and started a blog. If I was struggling with brain fog and lacking mental clarity, I would create a tea blend with ginkgo biloba and white tea; if I was lacking energy, I would target a tea with a higher caffeine content, such as yerba mate. Over time, I created many of my own recipes designed to help me get through my days.

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Photo: Susan Parnell

Eventually, through a reference from a friend, I found an infectious disease doctor who specialized in internal medicine. I made an appointment, and soon after that I started new antibiotics. [Editor's Note: Antibiotics are typically the first course of action in treating Lyme disease, but there are many different kinds and lots of debate among doctors about how to treat the disease]. This doctor was in support of me continuing my tea/herbal protocol in addition to the high-powered antibiotics he prescribed. The three (antibiotics, herbs, and tea) did the trick. After 18 months of intensive treatment, I was in remission.

To this day, I say tea saved my life and helped me get through each grueling day as I battled to heal my broken immune system and severe exhaustion. That's why, in June of 2016, I launched Wild Leaf Teas. The purpose of our tea blends is to help people live life to the fullest. If you lead an active lifestyle, you're going to hit bumps along the way. But by taking care of our bodies and our health, we are better prepared to handle the stress and chaos.

That's where tea comes in. Feeling low energy? Drink yerba mate or green tea. Brain fog bogging you down? Pour yourself a cup of lemongrass, coriander, and mint tea.

Lyme disease was a life changer for me. It taught me the true value of health. Without your health, you don't have anything. My own Lyme treatment inspired a new passion within myself and pushed me to share my passion with others. Wild Leaf has been the focus of my post-Lyme life and it has also been the most rewarding job I've ever had. I've always been an optimistic person for as long as I can remember. I believe this optimism is one factor that drove my determination, which helped me reach remission. It is also this optimism that allows me to feel blessed for the struggles Lyme brought into my life.

Because of Lyme, I am stronger mentally, physically, spiritually and emotionally. Every day is an adventure and I am so grateful that Lyme has opened this door for me.

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